My Celiac Journey: The Beginning

When I was first diagnosed with Celiac Disease, I’ll be honest—my initial reaction was, “How can this be?” How could I not have known that this genetic disease ran in my family? Which side of the family did it come from? At the beginning, it felt isolating, confusing, and frustrating. I wasn’t sure whether to feel relieved or devastated. On one hand, I finally had an answer to years of unexplained medical issues that I thought were just normal. On the other hand, it meant life as I knew it was about to change forever.

At first, I thought, “Okay, so I just have to manage my food.” But very quickly, I learned it was so much more than that. Before my diagnosis, I believed Celiac disease was only about eating gluten-free and everything would be fine. I had no idea it could touch so many parts of my health. Looking back, my anemia, thinning hair, brittle nails, frequent headaches, stomach issues, and even my unpredictable mood swings suddenly made sense.

What scared me most was discovering how serious untreated Celiac disease could be. I realised I had been carrying this silently for years. As time went by, I learned there was so much more healing I had to do. I had to hold myself up and make a choice—I wanted the opportunity to live longer, for my children and for theirs.

What I didn’t expect was how deeply it would affect me emotionally. Food has always been such a big part of culture, family, and connection, and suddenly, the gatherings I once loved filled me with anxiety. I didn’t like the attention of being singled out. I felt different. I didn’t want to be “that person” with the special diet. I just wanted to blend in.

With time, I learned to cope in small ways. I started carrying gluten-free snacks in my bag. I found restaurants where I felt safe eating. I became that person who Googles ahead of the day, who asks too many questions, who double-checks everything. It wasn’t always easy, but those little steps gave me back a sense of control.

I am the first diagnosed Celiac in my family. When I found out the disease has a genetic link, my diagnosis suddenly became bigger than just me. I encouraged my children to get tested, and in that moment, I realized that sharing my journey could do more than help me—it could help the people I love.

~Marge